Rachel's Medical Fund

My story beings in 2011, when I had severe abdominal pain. I had many hospital visits, tests done, multiple doctors, and no one had an answer. It became very exhausting and frustrating. My doctor at the time suggested the possibility of me having endometriosis. I never heard of it before and the only way to be diagnosed was through laparoscopic surgery. 

Endometriosis causes serious pain because the endometrium, the uterus lining, occurs in other places than the inside of the uterus. Every month when it break downs, the blood has no where to exit the body. This causes internal bleeding, cysts, and adhesions that can cause the organs to stick together. Severe abdominal pain can flare up at any time. This also decreases the effectiveness of my immune system and chronic fatigue. One minute you feel like you can probably get things done, next minute you can't walk because it feels like someone is carving out your insides like a pumpkin. 

In July of 2012 I had laparoscopic surgery, and lucky for me, my doctor was right about my diagnosis. She did ablation and from there it was pretty much hope for the best. Since then, she has retired and I haven't been able to find any help - until now.

Four years later, my suffering came back. It wasn't my typical few bad days and I know how to manage the pain, then bounce back to normal, as it had been the past few years. This is a pain that wasn't going away. Every month it gets worse for me. I wanted to learn as much as I could because it infuriates me to go to an OB/GYN and be told to take an anti inflammatory pill/aspirin for the pain (which by the way, I can't, I'm allergic). I began to take advantage of living in the city and doing my research for specialist there. I joined support groups to hear other women's stories because I don't know anyone else with endometriosis to talk to about this. It made me sick to learn what woman have to go through because of the lack of education of endometriosis. 1 in 10 woman have this disease, and yet many still haven't been properly diagnosed or even know they have it! It takes an average of 10 years to even be properly diagnosed. I thought in my 8 months I waited to be diagnosed was a lot, but soon learned I was very blessed to have the doctor I did. 

I then learned through support groups about excision surgery, which is what I'm trying to raise money for today. When I first had my ablation done through laparscopic surgery, it was just the surface of what the doctor could see that was removed. However, a lesion may be deeper than the eye can see. Think of an iceberg and they got just the top of the surface that they saw. There's much more to an iceberg that we cannot see. Now my endometriosis still exists and is growing. Excision surgery cuts deep into my organs and removes the endometriosis completely. A typical gynecologist does not have the proper education and tools to perform this surgery. I found one that did in the city. Many women travel all over the country to see her because excision specialist are so hard to come by. When I met her she was so passionate about helping me, and angry with the lack of awareness of endometriosis, causing me to not even be aware of this as an option. Anything that effects 1 in 10 women should be very well acknowledged, it shouldn't be this hard to seek help! Because of my first surgery, I have lots of scar tissue that is now attaching my organs to one another. They are now pulling to the left, causing more pain. She needs to open me up, and as she said "flip over each stone" and fully examine each and every one of my organs to fully remove the endometriosis. With this surgery I still have a 5-10% chance of reoccurrence. I like the sound of those odds as compared to the 60-80% reoccurrence for what I already had done, and well, look at where we are today. Some women have multiple laparoscopic surgeries before finally getting excision. I just want one more surgery. 

Now the fun part: insurance. All specialists in treating endometriosis are out of network with insurance. They are not money hungry surgeons, it's just they are still classified under OB/GYN, therefore insurance won't cover the surgery stating that it can be done by someone in my network. As excision surgeon, Dr. Seckin, described it: "Endometriosis surgery is 7 - 8x more riskier than any other surgery because it involves multiple organs. It should not be done by a regular gynecologist as a routine surgery. It should not be done by doctors who are delivering babies until 4AM and scrubbing into an excision surgery at 8AM." The specialist get paid the same as a doctor operating in one hour, while excision surgery can be up to 8 hours, so this is why they choose to be out of network. I already paid $875 for a consult (as I will have to each additional appointment - pre op, post op, etc.) Now in order to be treated is an additional $12,500 upfront two weeks prior to the surgery for just the doctor, and an estimated $10,000 more for hospital costs, anesthesiologist, etc. In total we are looking at roughly $25,000 to get treated. Obvioulsy this is a very urgent time frame to write a check for this much money, especially for them trying to schedule my surgery in the next week or two and waiting on this check. We did not have the $12,500 planned for and we're shocked to hear this news. We've fought insurance every possible way we could, and now our hands are tied.

If I don't get this excision surgery, the endometriosis continues to grow and my pain gets worse. This results in infertility, along with possible removal of effected organs. It's already gotten to the point my bladder is badly effected and may have to deal with that as well. I have a surgeon that reviewed my case and can help me get back to living a normal, healthy life, in just 6 weeks recovery. I have full confidence and faith that she can help me and I'm so excited to finally learn this may be the answer I needed these past six years!! The only thing standing in my way is money. So please, help me be able to say "I used to have endometriosis!"